A caregiver's wish list for a National Alzheimer's Agenda

When panels are convened to discuss the best way to deal with Alzheimer's disease (AD), the panels often consist of representatives from government agencies, national Alzheimer's organizations, medicine, research, and pharmaceutical companies. Although each of these stakeholder groups has much to contribute to such discussions, too often the voices of caregivers are not heard. Even the National Alzheimer's Project Act (NAPA) Advisory Council has only one full-time 24/7 caregiver as a member. Of 26 voices heard at the NAPA meetings, only 1 can speak for what life is like for a 24/7 caregiver of a loved one having AD. This article provides 10 items that I would raise at such a meeting based upon my own personal experience and what I have learned from others in my weekly spouse caregiver support group and in my online support groups. Some items suggest funding priorities, some suggest changes in how doctors currently diagnose and treat people with AD and their caregivers, and some suggest the need for more caregiver voices to be heard by government panels and politicians who have the power to effect change.